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how do you tell your children?…

As we usually do while driving around on errands, my husband and I listen to NPR News on the radio. In addition to the news, it offers regular anecdotal snippets of ordinary peoples’ lives.

The following hit home because my mom had Alzheimer’s for almost the entire decade prior to her death. It was rough-going for she and her caretakers, one of my older sister’s and her husband.

Hearing about the the disease from someone caught up in its web of deceit, might help us understand the victim’s traumatic journey into the unknown from which there is no return. Perhaps when we glimpse the unrelenting misery of someone losing his identity, built up over a lifetime, we can understand that the person we once knew is metamorphosing into a complete stranger.

And yet, he is no stranger at all.

He is like a newborn having to begin again. Unlike a baby, however, he is fully grown making it difficult for us to embrace him as though cuddling a tiny human being.

Journeying with someone stricken with Alzheimer’s is like living in Purgatory…halfway between earth and Heaven. As such we can’t expect to be completely human, and we’re certainly not angels or saints.

Alzheimer’s is…what it is…for both the victim and those suffering alongside him. No more…no less.

Here’s NPR’S broadcast…

ARUN RATH, HOST:

It’s ALL THINGS CONSIDERED from NPR News. I’m Arun Rath. Today we hear from a man who’s chronicling his own experience with Alzheimer’s disease. Greg O’Brien is a writer and journalist.

O’BRIEN: You ask me the question of who I am, there are days when I’m not quite sure. But in reality, my name is Greg O’Brien. I’m 64 years old. I’ve been married 34 years. We have three beautiful children. At age 59, I was diagnosed with early onset Alzheimer’s. The disease stole my maternal grandfather, my mother, and now it’s coming for me.

I was diagnosed in 2009. It was scary. I remember sitting in my neurologist’s office. He had all the tests results and the clinical tests that I failed and all that. And he’s sitting next to my wife. And he said that you have Alzheimer’s. The doctor looked at me, and he said, are you getting this? You have a battle on your hands. I’m talking to you – excuse me, this is hard to talk about -as if you’re terminal.

Now I have a strong faith, and I know I’m going to a better place, but I started thinking of my wife and kids. And I could feel water running down the side of my face, and they were my tears. How do you tell your kids that you got Alzheimer’s? It sucks. I had planned this family meeting so all the kids were home, and we were going to go out to dinner. I’m in the bathroom, you know, I felt a little bit like Luca Brasi in “The Godfather” practicing my speech, you know, on the day of your daughter’s wedding. And so I could hear, Daddy, where are you? So I came out and, you know, went over the fact that their great-grandfather, my grandfather had died of Alzheimer’s and my mother, which they knew, and now it’s come for me. And they were stunned. They didn’t quite know what to say. And Conor kind of cut through it, and he says, so, Dad, you’re losing your mind. And everyone laughed, and I laughed. And I said, you know what? That’s enough talk for today. Let’s go to dinner. And that’s what we did. And we started talking about the Boston Red Sox and the patriots and the Celtics. And I felt more comfortable in that.

So about a week later, we had a family outing in Coronado Island. And I had just basically assigned my son to be my guardian should something happen to Mary Catherine, and made him power of attorney. So I said we need to talk about this, and he didn’t want to. He wanted nothing to do with the discussion. So I said, OK, I’ll be right back. And I went inside, and I got 80 pages of medical notes that talked about my diagnosis. And I said, Brendan, you need to read it. I don’t want to read it, he said. So I started reading it. And he started yelling and screaming. I don’t know what words I can use here. He started saying bull [bleep], bull [bleep], bull [bleep]. And then he said, expletive, bull [bleep]. And I said, Brendan, you need to get this. He grabbed my medical records, tore them up and threw them off the balcony. And then turned to me and said, Dad, it’s bull [bleep] ’cause I know it’s true. Excuse me. He put his head in my chest. Here’s this guy now in his late 20s, and he cried like a little boy.

It’s difficult doing interviews like this. It’s like getting up for a big sporting event. You know, I say my mind is like my prized iPhone – still a very sophisticated device, but one with a short-term battery, one that breaks down easily, pocket dials and gets lost. So in writing and in doing an interview like this, it beats the crap out of me. But I’m feeling and doing it. I’m beating the crap out of Alzheimer’s. And there is a stereotype that Alzheimer’s is just the end stage when, you know, you’re in a nursing home, and you’re getting ready to die. And the point is no, that’s not true. There are millions more out there suffering through the stages of early onset Alzheimer’s who are afraid to seek help; they’re afraid to talk to people. And if I can help give them that voice so maybe things get a little better for them, then that’s good.

RATH:Greg O’Brien is a writer on Cape Cod. His memoir is “On Pluto: Inside The Mind of Alzheimer’s.” We’ll be following Greg as he chronicles his experience with the disease. Next week, he tells us about how his life changed since his diagnosis five years ago.

O’BRIEN:More and more, I don’t recognize people. And now people understand that, and God bless them, they come up and they introduce themselves to me. These are people I’ve known since childhood.

RATH:That’s next week. And you can read more about Greg O’Brien at our website, npr.org.

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6 thoughts on “how do you tell your children?…”

As I’ve mentioned before, my mother had Alzheimer’s. Thinking back, I think she began to show noticable symptoms at about the age of 70. In the 70’s, we didn’t know about Alzheimers. Dad just said, There’s something wrong with your mother.” I’m now past that age and still seem to be functioning alright, so I think it missed me. I worry about our children though, but hope some drug or cure will come along that will cure or manage it by the time they may need it. It missed my brother also. My mother lived longer than many with it. She was almost 93 when she died. Toward the last we had to put her in a nursing home as we couldn’t properly handle her physical needs at home. It’s a heartbreaking condition.

I’m certain my mom showed symptoms of Alzheimer’s long before she was diagnosed. As you said, it wasn’t a disease that was front and center as it is today. Sadly, I think we just thought she was being ornery at times. Most likely Alzheimer’s was already starting to skew her behavior. It is definitely one of the worst diseases because it steals a person’s essence like a thief in the night. As you said…it’s a heartbreaking condition.